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What truly happens during delirium? When do the hallucinations and terror stop? Survivors give us a sobering reality check of what caused the deep psychological trauma during their ICU stays and how their lives are forever impacted

Episode Transcription

Kali Dayton 0:28
Throughout this podcast, we have explored the reality that prolonged deep sedation causes traumatizing delirium with lifelong repercussions. Now we have heard intimate insight and revelations from research about post ICU PTSD in the last two episodes, but is that enough?

Have our perspectives empathy and compassion grown enough to change our practices? Do we get to talk to our patients before sedating them? Are we on the Watchtower seeing the big picture to guide our decisions? Or are we still just trying to get through our shifts with as little hassle as possible?

Are we still stuck at the delusion that prolonged deep sedation is sleep or remotely humane when we joke about or praise our sedation practices do we include the lifelong suffering we inflict, as part of our humor have the cries of survivors trying to tell us that sedation is not sleep yet penetrated us have we woken up to the reality of sedation and delirium and allowed our patients to be awake so as to prevent the demolition of soul? On this episode, more survivors have been willing to be vulnerable and open with us made their voices be enough to move and change us. The best instructors are those that have and continue to live it

David Richards 1:47
“After I was clinically diagnosed with PTSD following my period of critical illness, which was severe ARDS, requiring ECMO treatment, I went through the following psychological therapies in order counseling, CBT. And lastly, EMDR for around 18 months, I used to go every week, but I’d get so wound up in the days leading up to the appointments.

Then I was emotionally exhausted for several days following the sessions that we had to change the latter EMDR appointments to every two weeks to give me some respite between sessions, I was only able to feel calmer and more relaxed, leading to better sleep and an easing of intrusive thoughts. When I came out of that process as the constant raking over of distressing memories, and immersing myself in them just kept everything fresh in my mind, and I couldn’t switch off from it.

This is purely my own personal experience, and I seem to be in the minority. As I mostly read about the success people have had with it. I’m always reluctant to talk about medication as that is something that needs to be discussed with your doctor. But to aid with sleep, I was prescribed matassa pain or its other name REM Iran for its sedative effect, it worked really well. In fact, it worked too well. As it would take me some hours after waking for my head to clear and be able to think straight, it can also lead to weight gain. When I stopped taking it, I lost more than 30 pounds within a couple of months. For around six or seven years. It did the job with helping me sleep but the side effects led me to stop taking it as with anything whether it’s psychological therapy or medication, what works for one person may not work for the next.”

Spencer Freeman 3:24
“My PTSD as a result of the trauma I received in the ICU. Due to the conditions I was experiencing the diagnosis I had severe necrotizing, pancreatitis and my hallucinations and intrusions can all be tied to that. So I experienced physical hallucinations that mirror situations and sensory input from the ICU.

And my nightmares and hallucinations are often identical or very similar to the nightmares of memories in which dice experienced in the coma. So again, I PTSD is a direct result of and has been diagnosed as such as the experience I went through and the treatment for my critical illness. I do vivo exposure work and mindfulness to try to attempt to manage them. The symptoms have been intense ever since I left over four years ago, one particularly novel practice that my therapist has gotten me doing and she had to grow a beard until I use that as a part of a grounding technique to draw a line in the sand and figure out where and when I am.

I never I never had a beard before I shaved every day in the beard allows me to begin to ground myself to figure out where I am and to understand what’s happening to me, and to try to process it and to come down from the often intense and very scary nature of PTSD especially when it is activated from either medical treatment or just my daily symptoms.”

Survivor 1 4:55
“I too suffer from Post intensive care syndrome. I became sick in In April of 2018, when my colon ruptured, and I ended up in a coma for 35 days, I was in the hospital for a total of four months, I suffered tremendous ICU delirium. And to this day, I suffer from Post Traumatic Stress, I have to tell you, in general, I’m a breast cancer survivor. I had a lumpectomy and seven weeks of radiation five days a week. And that was a walk in the park compared to ICU delirium and picks. Personally my PTSD gets activated, the minute I have an IV inserted, I begin to taste, saline and alcohol. Before I know it, I’m in a full blown attack, my heart is beating out of my chest, and I become afraid that I’m dying, and I can’t say goodbye to any of my loved ones.”

Survivor 2 5:45
“Life is different. Now guys, don’t wake up. As you know, when you wake up from a four week coma, nothing is ever normal. So I like to learn to live with the strange dreams that I had, whilst in a coma. None of it makes any sense really, you know, even now, after two and a half years, I don’t really get the the gist of it all, then there’s obviously all the scarring, and a few other little aches and pains that I’m still sort of getting over. It does change.

It’s difficult to explain, but you’re a changed person. And I’ve noticed that I have very little patience with people and the mood swings thrown in. But then again, I’m nearly 50. So I’m a grumpy old man, really. And I’ve also noticed I can be quite direct with people. So in our support group, we liken it to having no social filters. So you know, when you speaking to somebody, they might ask you a question or make a comment and then you just respond in a way that sounds not offensive. But you know, it’s almost like a put down or just to direct I think sometimes.

So you know, we people take you through you are now you are they asked, and then the insomnia is still a bit of an issue. You’re awake most of the night and then you need to go to bed when you want to get out when you want. So I usually know when I wake up that it’s going to be a bad day. I feel lethargic, totally void of motivation. And I just lay down in bed wide awake some mornings and have absolutely no intention of getting up. So you know, it’s quite painful to sort of drag yourself out of bed if you like serve, but we get there eventually, the impact on quality of life.

It’s not so bad anymore. Two and a half years post coma now, I still suffer a bit, but in the early days, I was a complete mess. I had Susan Semenya too scared to sleep in case you didn’t wake up, which was a bad one. I would go to bed as late as possible. And then instead of laying down in bed, I would sort of sit up hoping I wouldn’t fall asleep and then just sheer exhaustion took over. So you would eventually fall asleep. And you know, that was most nicely for me for a very long time. I was jumpy, angry, especially at the wife why she’s still with me. I don’t know. I’ve medical anxiety which made hospital visits and appointments an absolute nightmare for one round of tests in particularly out to sedate me for those that but”

Survivor 3 7:58
“I remember being in ICU right after they had taken the ventilator out. And I was conscious but still couldn’t move my body. A member of my baby brother ex military Sergeant walked in. He looked at me and I can see the shock on his face at the well look, I had still 17 IVs of up to me the result BB add ports in my neck. And in both arms. When they had done dialysis. When my kidneys had quit, I had a catheter. And for I guess urine output and the feeding tube in, still couldn’t move my hands. And I remember trying to speak and it hurt to talk. And I started crying. I said, bro, I don’t want to die. It’s not my time to die. When I have a new pain, that same fillings from the ICU comes back. I don’t want to die. I just wanted to block to die. Every time I go into a hospital of doctor’s office, or any type of medical facility instantly I get that same fear is I had that David looked at my brother and I start crying like is about my time to that I don’t want to that has never left after all these years.”

Survivor 4 9:09
“I was a newborn baby, I had to learn how to do everything all over again. I mean, it was four or five days before I could make my hands, find my fingers and make my hand touch my face. But I was happy. I was happy to be alive. And then I had to learn how to walk all over again. Climate stairs and and all the stuff that rehab. I had to learn everything all over again. Nobody prepared me what to expect. When I got home. I cannot wear a mask. I absolutely cannot wear a mask and I’ve started thinking therapist and she said it’s completely normal treatments that I’m doing ongoing. I just started seeing a therapist.

But I had to find that I had to say tell me After the end of June when I saw him, Doctor, I think I had post sepsis underneath. And well, we talked about symptoms. He’s like, Well, I’m not familiar with that, but I know PTSD, D, and you definitely have PTSD that I don’t feel comfortable with. I’ve got a nephew who’s almost five, and a niece who’s too and I love them with every fiber of my being, they’re too much I get massive anxiety attacks and they’re getting better, but going to town going into the city and, and going out to dinner or in a restaurant, that’s overwhelming. And I’ve actually had panic and anxiety attacks, my life is different with PTSD.

Because I spend a lot of time by myself, and I’m very, I’ve always been social. I’ve always been a social person, I laugh at everything, you know, joy, and I love laughing and I love being around people. And when I walked in the room, I was so excited. And, and I’ve had people tell me this, I never really saw it. But now I kind of do is that it kind of was notice whether I was laughing or talking or whatever. And if you were to see me now I don’t talk a lot in public. I don’t even with my family. My family knows. And my, my really good friends, my best friends.

They’ve all told me that I’m just I’m the same, just different, and just not me. And that’s the hard part is that for me, I lost I feel like I’ve lost myself. And we simply in prisons are so encouraging and wonderful. And they say you’re going to come back, temporary is going to come back but it’s hard to keep me hopeful that I will come back. Because, what if I don’t?”

Survivor 5 11:52
“In my case. I was never aware that I’ve been hospitalized until a few days before I was released in the hospital after almost a month in a coma with literally no information as to what had happened to me what to expect post ICU and no mention of any cognitive deficit or PTSD, Post ICU. I had no idea what had happened to me. I could either believe what my wife was telling me about sepsis and hospitalization or I could believe what my very vivid memories of delirium were telling me.

In my delirium, I’d been sent to prison for 10 years where I was hung from the ceiling and tortured daily, the torture included were being run through a source and genital mutilation. It took a few years before I was totally convinced that what had happened in my delirium wasn’t real. When I got home, my speech was slurred, I couldn’t recollect may recollect the Names of Most common objects. I had forgotten how to do such common tasks as brushing my teeth and tying my shoes.

I completely quit communicating with the outside world, or with anyone but my wife, and didn’t leave my house for the first five years except for metal medical appointments into surgeries to try and repair the damage that had been done to my shoulders while I was in restraints. Now the question was answer the following questions what caused your PTSD? The answer is I don’t really know what caused my PTSD.

And I denied that diagnosis for years before being told by a neuropsychologist that whatever you experienced, the delirium is received as read ality, by your amygdala. And there can therefore trigger PTSD, even though the perceived perceived threat isn’t real. What triggers my PTSD, literally anything and everything can trigger my PTSD. And much of the time, I am not aware of what the trigger was, the longer I’ve had PTSD, though, it’s been 11 years, I should have said that the beginning I’m 11 years post C, PTSD, Post ICU, and I’m still suffering from at least as bad, you know, for the PTSD and the memory issues, cognitive issues as I was 10 years ago, in what way has this affected my post ICU life, my life is completely changed. Post ICU, I have been a professional musician for most of my life, and I can no longer work part of my cognitive partly because of my cognitive deficit issues, and partly because of the physical damage that I did to myself while in restraints.”

Survivor 6 14:02
“And I kept hearing religious music. And I thought I was in a funeral home. And I wondered, I kept thinking that I was going to be buried alive. And I couldn’t speak and I couldn’t move and effect was I had trached, I was paralyzed, and I thought they were going to bury me alive and I kept thinking, I just need to open my eyes open my eyes. To this day, when I go into a store, anything’s gonna hear religious music playing over my head just didn’t almost six years later, I have to wait. I can’t take it in, it’ll trigger a panic attack.”

Kali Dayton 14:35
So before you push start on the pump, please consider all we have discussed throughout the past 52 episodes. Consider the psychological safety of your patients in that moment and for the rest of their lives. Please remember these testimonials when weighing the risk versus benefit to medically induced comas for your patients. Be sure that if we set the date that it is absolutely essential and for the patient, not for us.

Mark Hudson 15:08
“Hi, my name is Mark and I am an ICU survivor of real a poem that Kelly wants me to read for you.

My Words won’t always be laced with sweetness.

Sometimes I must put them in venom.

Because if I pat you on the back, you won’t hear them.

I must get them into your system make you feel them.

Perception and reality, not interchangeable. A voice this person is not sitting quietly, that body leaves before you is screaming and silence.

So I must employee if you use sedation, it better not be for you because you are taking away more than a voice if you do.

You’re putting them in prison.

And back to the fate.

Delirium is no fun.

If you had it would change your life.

So I ask you this, what would you want done?

If it was who would you want to be sent back for round two?

For what reason you made implore? Because you were too loud. They could hear you on the floor.

I’m not here to shame you.

But I want you might see the effects before it goes bad.

Deleting them is a problem I know to be true, but we can make a difference.

Me and you minimize the sedation.

Forget the antipsychotics for delirium, reorientation.

Family and friends, reduce the noise, normalize the late get the circadian rhythm back in the fate so the patient knows day from night. Thank you for listening.”

Transcribed by https://otter.ai

 

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